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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

Janet Dafoe

Janet Dafoe

Board Member
Messages
867
Cindy Bateman showing off her wild socks.
image.jpeg
 
Snow Leopard

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Deborah Kavounas said:
What do you want to know about what’s going on there?
Who would you like to talk to?
What would you ask them if you were there?
Click to expand...

1. Everything
2. Everyone

3. I have lots of questions, but I will limit it to the following.

It needs to be explained that the feeling of fatigue experienced by patients is not drowsiness and is not the pain that healthy people feel after exercising too much. More specificly, we experience the feeling that you cannot keep up this activity for very long, perhaps akin to when a person exercising has reached their limits.

The first question is why aren't there any studies using known medical subgroups, to identify the biomedical causes of chronic fatigue?

For example, a high proportion of EDS patients experience Chronic Fatigue Syndrome, likewise a majority of patients with Guillain-Barré Syndrome end up with persistent and severe chronic fatigue, despite testing negative on the typical neurological tests.

A second questions, is has anyone at the conference explicit drawn out all the clues in one place, basically a series of things that a viable model of CFS or ME needs to predict. (eg onset triggers, onset kinetics, symptom kinetics, and notable biomedical findings)

A key common element to all of the "models" that I have read, is that they are far too non-specific and there is no explicit or often even implicit relationship between the elements of the model and the actual lived experience of patients.

Very few researchers seem directly consider the kinetics and relationships between symptoms in their models, and reduce these down to specific testable biological factors. For example, physical activity leads to cognitive fatigue with a delay (PEM), but increased mental activity doesn't lead to increased muscular fatigue in the rest of the body. Why?

Similarly, activity leads to additional fatigue that is specific to the muscles that were used, this suggests to me that there is still a significant peripheral aspect to the experience of fatigue. Likewise, the reduction of performance on the 2 Day CPET indicates that Chronic Fatigue Syndrome is not merely an illness of disturbed central fatigue perception. It seems that the disturbance of fatigue signalling is happening at the periphery, rather than merely in the brain and so a key question, is anyone looking at the relationship between specific metaboreceptors (specific GPCR, tyrosine kinase receptors and serine threonine kinase receptors, and possibly scavenger receptors like CD36) and the sensitisation or stimulation of afferent nerves likely to be involved in fatigue signalling. The kinetics of symptoms I mentioned earlier can narrow down the possibilities. Likewise, the stimulation or antagonism of these receptors needs to match patterns observed, such as the metabolic findings by Fluge & Mella, the altered Acetyl Carnitine metabolism findings, the TGF-Beta and so on. Such models also must necessarily have explicit self perpetuating feedback loops, akin to the models that Jonathan Edwards has discussed for autoimmune illnesses.

I'd greatly appreciate if Deborah, Ben or Rose ask these questions of the group.
 
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S

Starlight

Senior Member
Messages
152
Thanks Janet for posting the pics.this is what hope looks like to me today.im so thankful to all the people who are here so generously trying to figure out the intricacies of ME. It looks full of energy and buzz and I'm hopeful and thankful.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
I think the suggestion of asking questions applied to Saturday's live streamed talks, not to the scientists discussion days.

Realistically I don't imagine there will be time to put detailed questions to the speakers from us watching on line. I'd be happy just to watch the talks, either on Saturday or later on You tube, and think about any questions afterwards and discuss them here.
 
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